Joint pain

[Heidi-B]

In the past I was diagnosed with Rheumatoid Arthritis then told I had fibromyalgia when I switched rheumatologist. I quit going to doctors and taking meds (hydroxychloroquine, enbrel and mythelprednosolone) and started crossfit which did help until I needed spinal fusion (bounce house not crossfit) which did help somewhat. I am now wondering if the joint pain may have been related to HS/APS?

Is joint pain something that can happen with HS/APS?

Thanks

Heidi

[Tucson]

It's probably the most common symptom along with muscle aches.

[Heidi-B in reply to Tucson]

Thank you!

[Heidi-B]

It was over 4 years ago that I stopped seeing a rheumatologist for RA and/or fibromyalgia. i never felt like the 2'nd doctor was correct with the fibromyalgia diagnosis and she said no to the diagnosis if RA. The meds made me sick to my stomach. I didn't like taking meds for conditions I may not have truly had. So I turned to Exercise and a healthy diet. Even with diet and exercise I do have pain in knees and hips.

I do get the headaches and that is not fun.

I will speak to my hematologist at my next appointment about the joint pain see If he can recommend a good rheumatologist.

[Kalykrill]

When I was diagnosed with APS after my DVT, heart attack, and PE. My joints have progressively gotten worse over the last 10 years. I was very active and had no joint issues until after I had my episode. Now my joints are getting worse. They say I have arthritis also fibro. People I have discussed with that also have APS have joint pain and muscle pains. Sometimes my hips hurt so bad I have a hard time going to sit down after walking to the recliner. Every day something hurts bad.

[Heidi-B in reply to Kalykrill]

That is exactly how my hips feel. I do find stretching and exercise does help somewhat. I do have awesome trainers who understand my limitations and give me modified movements.

Woke with hip pain this morning went to the gym for a boot camp style workout and I feel less stiff.

[Tucson]

I've never had a migraine but tbf you can find loads of excuses for joint pain, I know I did on the rare occasion I had it, until of course my knee disintegrated with no warning and now the second one is going, as a result I can barely stand and no longer walk. I currently have knee, back, elbow and hand pain.

[ndstephens49 in reply to Tucson]

Hi Tucson, I had lots of jaw bone pain as initial symptom of APS. Turned out I had osteonecrosis of jaw bone secondary to ischemia caused by APS. I have also taken prednisone which, unfortunately, can also cause osteonecrosis. Some people end up needing joint replacements simply from taking prednisone. It's a 'double whammy' if you have APS and have also taken prednisone

I didn't realize, though, that joint pain was such a common symptom of APS. I learn something new here every day.

Keep fighting the good fight.

Nancy

[Heidi-B in reply to ndstephens49]

I am trying to learn as much as I can so I ask questions here. I never heard of APS until I was diagnosed in October 2016. I was just curious about the joint pain because I know how I feel on a daily basis. It's not fun.

[Lure2]

I agree with APsnotFab that you should go back to a Rheumatologist and do ev a lot of bloodtests as it was a long time ago (4 years) you was properly evaluated.

Best wishes from Kerstin in Stockholm

[Heidi-B]

Thank you all for the feedback. My hematologist did a whole lot of blood work after my clot was discovered and redid blood work at my last visit. I know I do need to follow up on the joint pain so my task now is to find a good doctor. Unfortunately my experience with the last 2 rheumatologists weren't great.

[Tucson]

well the specialist at St Thomas' questioned the OA diagnosis last week he believes it's unlikely to be OA because of the sudden onset. Although I was told a year ago I needed an urgent knee replacement but I'm apparently too high a risk due to multiple strokes the last with an Inr of 4 so it seems they've gone back to square on in the evaluation process. All my joint pains came on suddenly and recently too.

[Heidi-B in reply to Tucson]

I know my orthopedist told me a few years back that my knees appear to be older than me by about 20 years. My husband asked what could be done about that & the doctor said replacement but it would be years until needed. That was when I was 45. So I definitely know I do have some osteo-arthritis. Always fun!!